Glad for my family

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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
The one bright spot for me in this hell of a disease has been my family.
I was working out of town when I was diagnosed. My wife and daughter came up and spent a week packing and moving my things sine I was too weak to do it.
My wife takes care of me and also runs a business- sort of like Barbie.
Yesterday they both had to help me get up off the floor.
My daughter is in her first year of college and it amazes me how she can do so well with everything that is going on.
She gets grest grades, volunteers to help disadvantaged people and is very good muically and with painting. We have one of her pictures hanging on the wall. I am very proud of her.

I wont get to see her graduate, but I wish for her a good, happy and fruitful life.
 
While your comments bring sadness, they show me what a wonderful marriage you have Neil and what a special daughter you have. Many people, family or not, pack and run. Yours are with you and supportive. I am glad you have these wonderful ladies in your life!
 
Neil, your comments were a bright spot to the day. Hope you share it with your girls! Amazing how adversity helps you see the blessings that we so easily take for granted. Thanks for sharing those beautiful thoughts, Neil. (And hope you and the floor didn't connect painfully!). Donna
 
Make sure you let them know this too Neil :)

It never detracts from how crap this disease truly is, but I personally was so thankful to read your beautiful words about how much you can see and appreciate your family. You do have things to still be thankful for and appreciate, even amidst ALS.

Now what happened to rule #1?

hugs
 
Rule 1 ( hitting the floor) seemed like a good idea until I passed out. next thing I know im face down on the floor. Fortunately there was a rug not tile, and I must have bounced off a near by sofa which cushioned my fall-didnt have even a bruise-except to my ego.
 
I,too, hope that you share these thoughts with your family, Neil. They are beautiful. I've read your angst and anger, and it's wonderful to read the other side of your journey. You are blessed with wonderful women in your life, and that tells me much about you :)

Passing out--that doesn't sound like the usual PALS fall. Do you have any idea why it happened?
 
my blood pressure tends to go very high and then very low. Who knows, maybe thats another disease, but what difference will it make. Soon enough I wont be able to get up to fall down. And your right, i'm really scared and pissed that I got this da** disease. I know others have it who are even younger, but I had 2-3 more decades I should have lived.
Last time i even got sick was 1994 when I got the flu, now this.
 
If, and I mean a damn huge IF, there is one thing good this disease brings, is the ability to let our most beloved families know how we really feel, to express pride, gratefulness and love when they need to here it.
Thanks for sharing your family with us Neil.
God bless, Janelle x
 
Neil....it was good to read your first post on this thread. I remember when you first came on board, you were pretty up beat and mostly positive. Then your progression took over and it was almost like you changed over night. That is what I mean by this was good to hear.
I to fight with that rollercoaster of emotions: anger, fear, depression and anxiety. Good to see that we have an appreciation of what surrounds us, in spite of the brutality we face every day.:)
 
Neil, you shoulda stayed passed out until they had you up and in a nice chair, then you could have pretended there was no fall at all ;)

SO glad you have no injuries!
 
>Then your progression took over and it was almost like you changed over night. That is what I mean by this was good to hear.

Ditto that!
 
Actually Tillie thats just what they did-lifted me into a chair by the window with a nice view of the trees!
 
Thank you big Mark. Yes, I get pretty upset when I think of things like not being able to blow my nose etc. The way I fill up waste baskets with tissues i'd have to hire a full time person just for that! Ill try to keep in mind that we all understand and just say I'm down when I get like that.
Right now Im dealing with losing my hands and trying to find a peg formula that doesnt give me the runs before I choke on something I eat. Hopefully something works out.
It would help if I could just stabilize for a little while.
 
53, My heart is bleeding for you. It down right scares me to death projecting myself ahead to where you are now on this freaky superslide. I'm still able to walk and do for myself at this point, and do try to stay as positive as I can. I, like you have a wonderful and caring family. A major positive.

When I get feeling depressed here's what I think about: Everybody must die, I thank God that my looming death is special in this way.....It's not sudden, like a heart attack. One minute being there, and the next being gone. I'm able to prepare financial matters, get everything in order for the transition of leadership to my wife. Then, spend as much quality time with her and my kids as time will allow.

In my mind, I rationalize loosing my muscles as regressing into infancy. I'd rather not go there, but am at peace knowing that I'll be hovered over and cared for...just like a new born. I'll be loved, all the way to that ol' Jordan Ford.

Hope that helps. God Bless Us All.............Glenn
 
Thank you big Mark. Yes, I get pretty upset when I think of things like not being able to blow my nose etc. The way I fill up waste baskets with tissues i'd have to hire a full time person just for that! Ill try to keep in mind that we all understand and just say I'm down when I get like that.
Right now Im dealing with losing my hands and trying to find a peg formula that doesnt give me the runs before I choke on something I eat. Hopefully something works out.
It would help if I could just stabilize for a little while.

I completely understand where you are coming from. My progression is slower than what you have had, I am starting to loose my left hand and my lungs are going. It is all brutal, be it slow or fast.
I can't even fathom being in Davbo's position, he has no use of his hands, and can't hold his head up. All of that and he is more upbeat than me.
You guys are heroes to me for handling it as well as you do, and not giving up like I could do.
 
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